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Tetralogy of Fallot (TOF)

pattyleo182

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Hi all,
I'd like to tell you about our boy Max and his journey through this awful rare heart condition.

My husband Ian found Max (a Sphynx) wondering on our street, cold and lost back in May 2019. He spent one night with us and I felt in love with him instantly. We called our local vet who came by and scanned his chip. They said the chip was registered in Russia but she believed he might live nearby.
So he was returned to the owner and I didn’t see him again for another 7 months.

At the time I thought it was a girl and named her Lulu I had never had a cat in my life so I knew nothing about them.

Bc we had bought “Lulu” some food and littler, we wrote a letter to the owner saying we had fallen (Myself particularly) in love with their cat and would like to donate what we had bought the cat and have a proper chance to say goodbye. It wasn’t until December 2019 that the owner got in touch with me and asked if we could look after Max (that was his real name and ends up he was a boy!) for the holidays.

Of course I said yes! And that’s how Max came back into our lives and basically hasn’t gone away since.
Soon after his owner told us she wasn’t able to look after him properly anymore and wanted to share him as he liked it so much with us.

He became my baby. He’s the most playful, loving, funny cat I’ve ever met! He behaves a lot like a dog, as most of you would know, because he has no fur he’s constantly looking for cuddles, warmth and love. He’s quirky and clumsy and silly but the most passive, lovely thing.
Ours is actually his 5th home. Apparently he was born in Latvia, then lived in Russia, Cambridge, London and now us (also London). But in our house he’s the king! He sleeps with us, he gets loads of attention and he’s taken over our whole world.

His owner had actually bought him to haunt mice but Maxi is no real hunter so the deal is we'd give him back whenever she hears mice coming back (She lives only 10 doors away). She's a nice lady but has kids and a dog and probably a lot going on so she's simply unable to give him the attention he needs.

He went back to fulfill his duties about 3x since December, only for a few days. Things were a bit chaotic at their home so she’d call us straight away so we’d come collect him each time faster than the last.

The last time he came back to us (about a month ago before lockdown) we noticed he had a bit of a belly and his breathing was really high. When I raised this with his owner she mentioned he might’ve eaten the dog’s food and sometimes he breathes heavy cos he’s running after the dog.

For a full week he was in bed the whole time, I assumed he had a cold (maybe even corona :/ ). He even had some coughing episodes that my husband thought was hair balls but how could he if he has no hair! I started a diary with his breathing and counted 40-45 breaths per min on avg. A week after he came back out of his slumber and I realised he had a really bloated belly. I called our local vets (the ones that had reunited him with his owner) and she mentioned I should continue checking his breathing but that for the time being they weren’t seeing patients. He was eating and pooing as normal so they said he was alright as long as he was doing those two.

I felt like he wasn’t the same old Max and after 2 weeks of the belly not going away (and me realising it was definitely not dog’s food or him being fat) they finally agreed to see him.
So last Friday the vet saw him and said it was bad news and he may have a heart murmur but needed to be taken to hospital as his lungs and stomach were full of liquid.
She had started a dose of Furosemide but he needed to have it continued overnight and have an echocardiogram in a hospital to scan his heart properly.

He spent the night at Blue cross hospital that Friday night and for me it was probably the saddest night of my life not knowing if my baby was gonna make it out as the doctor said it wasn’t looking hopeful. We prayed and lit up candles.

(Despite it all being so weird already bc of the lockdown - I wasn’t allowed anywhere, barely even managed transportation to take him there, The owner actually lent me her car).
Against the odds he made it through and got discharged on Saturday night. He had lost 600ml of excess liquid (came back skinny as bones) and the results showed he suffers from TOF (Fallot Tetralogy) a vert rare heart disease that animals can be born with. In Max's case he has got 3 defects in his heart, a small hole and 2 defective valves.
The doctors said his prognosis is very poor and only has weeks to month. I am trying my hardest to stay hopeful. I want to think he’s already been through so much in his little 2 years 9 months of life, so he’ll make it out of this one.

I then joined a FB group of pets with FOT, there's only 7 members. Their pets seem to have the same symptoms (apart from the bloating) but despite them also having a poor prognosis, some have defied the odds and are still alive after 6-8 years.

He’s on furosemide 1ml every 8 hours. We follow it religiously bc we don’t want his lungs and chest filling up with water again. The doctor said it may already be happening.

As I write this, Max has been out of hospital since his diagnosis and the removal of 600ml of excess liquid in his belly and lungs for 1 full week. Initially it was a bit tough as he was extremely weak, acting like a little drunk man, tumbling, lethragic and not wanting to eat much. I now realise that was the Furosemide kicking in. Within 3 days he was back to his happy self, jumping around, running and devouring his food day and night. Unfortunately his bloated belly is back with a vengeance. His breathing is still under 30/min which means its not affecting his lungs or his heart but he's not able to realease the liquid fast enough and just keep filling up. The vets have said that we may be able to change the medicine (tomorrow as it needs to be ordered and that can still take a few days) but that to remove the extra liquid he may have to sedated again and stay in hospital overnight and with his heart condition it is not ideal for him and that I need to consider sending him to babies heaven which I'm simply not sure how to do or even if I can go through it with. I am trying to make this only about him and giving him the best life he can possibly have. I want to give him the chance to live a good life.

He's so happy and bouncy now that I'm so confused and not sure what I should do. (Here are some pics of when he came back from hospital and back with his bloated belly again). Does anyone have any advice? Has anyone been through something similar?

Thank you for reading!
Patty

Pics: 1. The day we found him. 2. In his favourite sunny spot. 3. Sleeping baby. 4. Sleeping with the enemy. 5. When he came back from hospital. 6. Today with his big belly again
 

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Beckinboots

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What a gorgeous boy Max is and how very lucky he is to have you. Sending healing vibes and wishes for a long and happy life together.
 

Catzzzmeow

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Huge sigh. So many emotions came over me reading your thread and I can only imagine yours are 100 times bigger. That beautiful boy is exactly where he should be and as crazy as the path was to get into his forever home with you, he has entered your hearts forever...lucky you...and even luckier Max. Spend your days present in his life he has no idea there are any issues and he just wants his routine to remain in place...you are his everything. None come with expiration dates...so cherish every day. We are here for you.
 

Sheldon13

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My kitty Ellie has a different heart condition (ARVC) but has similar symptoms to Max. She also takes daily furosemide and it works well for her right now. My vet has told me that as long as we can keep the fluid off of her heart she will continue to live a good life, but it is inevitable that at some point she will go into heart failure again. What I would say to you is that trying only one thing (furosemide) and giving up when that doesn’t work is not what I would do. I wouldn’t let him suffer, no, but I would exhaust every option before making the decision to say goodbye. I definitely think you should try other medications or therapies.


Love and Sphynx ~ It’s all you need
 

pattyleo182

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My kitty Ellie has a different heart condition (ARVC) but has similar symptoms to Max. She also takes daily furosemide and it works well for her right now. My vet has told me that as long as we can keep the fluid off of her heart she will continue to live a good life, but it is inevitable that at some point she will go into heart failure again. What I would say to you is that trying only one thing (furosemide) and giving up when that doesn’t work is not what I would do. I wouldn’t let him suffer, no, but I would exhaust every option before making the decision to say goodbye. I definitely think you should try other medications or therapies.


Love and Sphynx ~ It’s all you need
Hi @Sheldon13 I'm sorry to hear about Ellie, but I'm happy she leads a happy life! What you are saying are exactly my thoughts! There's gotta be another solution! I have consulted now with 3 vets and even 1 human doctor! They all tell me the same thing, that if Max won't have a good life it's in his best interest to pull the plug. His heart is not gonna get better. But I am not taking a NO for an answer.
Tomorrow Max has another video appointment with his hospital doctor, where I will consult if we can change his medication and if he can be drained again (apparently he was mildly sedated when first drained and used a butterfly caterer somewhere in between his ribcage to drain the 600ml). At the same time, his local vet will check tomorrow for alternative medicine to furosemide as she has to order it.

Obviously corona complicates things in all aspects but to me the fact that both my husband and I are home all the time with Max to watch him is a blessing in disguise.

Thank you for your response.
 

Sheldon13

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How is Mr. Max doing today? How did his appointment go?

@pattyleo182
Love and Sphynx ~ It’s all you need
 

pattyleo182

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How is Mr. Max doing today? How did his appointment go?

@pattyleo182
Love and Sphynx ~ It’s all you need
Hi @Sheldon13 thank you for reaching out. I wish I had better news.
His private vet said we will try to introduce Spironolactone as the Furosemide doesn't seem to be working. She ordered it today but it may take some time to arrive. She said that she won't be able to drain him as it's a small vet (they are barely open as it is) and she doesn't have oxygen.
Introducing another needle into his chest can potentially open up another can of worms (infection, more stress in his heart, etc)

His hospital appointment wasn't as hopeful as I would've hoped. They said (in the best way possible) they are basically just waiting for me to make the call (as the actual owner is on board for putting him down), and because it's working as an emergency hospital atm they can only give him generic Furosemide and either way there's nothing else that will work as his heart walls and cavity are already too strained. They give him weeks at most.

As soon as I finished those 2 phonecalls, his breathing started raising from 26/27 min avg to almost 40 which can only means it's already getting into his lungs.

I'm so torn as I look at pics of him only a month ago and none of this was happening. He's only 2yrs 10month old. He constantly comes for cuddles and I could never bring myself to making the call. I am giving him the best life possible every minute but it is so so hard.

I've done some research about pinneaple water being a natural diuretic so i've added really little doses of boiled pineapple skin into his water, at this point what else can harm him?

Thank you,

Patty

(I've attached a video of his belly today)
 

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Sheldon13

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I’m so sorry Patty. That is truly disappointing. It’s even more disappointing to me that the vet is unable to treat him. Is there another vet you can go to that will have the necessary supplies? Is there a veterinary cardiologist near you? They would be best and could really tell you for sure if it’s time to let go.


Love and Sphynx ~ It’s all you need
 

Sheldon13

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Also I wonder why they don’t want start him on something like Enalapril to help his heart pump more effectively.


Love and Sphynx ~ It’s all you need
 

OddlyNude

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Hi all,
I'd like to tell you about our boy Max and his journey through this awful rare heart condition.

My husband Ian found Max (a Sphynx) wondering on our street, cold and lost back in May 2019. He spent one night with us and I felt in love with him instantly. We called our local vet who came by and scanned his chip. They said the chip was registered in Russia but she believed he might live nearby.
So he was returned to the owner and I didn’t see him again for another 7 months.

At the time I thought it was a girl and named her Lulu I had never had a cat in my life so I knew nothing about them.

Bc we had bought “Lulu” some food and littler, we wrote a letter to the owner saying we had fallen (Myself particularly) in love with their cat and would like to donate what we had bought the cat and have a proper chance to say goodbye. It wasn’t until December 2019 that the owner got in touch with me and asked if we could look after Max (that was his real name and ends up he was a boy!) for the holidays.

Of course I said yes! And that’s how Max came back into our lives and basically hasn’t gone away since.
Soon after his owner told us she wasn’t able to look after him properly anymore and wanted to share him as he liked it so much with us.

He became my baby. He’s the most playful, loving, funny cat I’ve ever met! He behaves a lot like a dog, as most of you would know, because he has no fur he’s constantly looking for cuddles, warmth and love. He’s quirky and clumsy and silly but the most passive, lovely thing.
Ours is actually his 5th home. Apparently he was born in Latvia, then lived in Russia, Cambridge, London and now us (also London). But in our house he’s the king! He sleeps with us, he gets loads of attention and he’s taken over our whole world.

His owner had actually bought him to haunt mice but Maxi is no real hunter so the deal is we'd give him back whenever she hears mice coming back (She lives only 10 doors away). She's a nice lady but has kids and a dog and probably a lot going on so she's simply unable to give him the attention he needs.

He went back to fulfill his duties about 3x since December, only for a few days. Things were a bit chaotic at their home so she’d call us straight away so we’d come collect him each time faster than the last.

The last time he came back to us (about a month ago before lockdown) we noticed he had a bit of a belly and his breathing was really high. When I raised this with his owner she mentioned he might’ve eaten the dog’s food and sometimes he breathes heavy cos he’s running after the dog.

For a full week he was in bed the whole time, I assumed he had a cold (maybe even corona :/ ). He even had some coughing episodes that my husband thought was hair balls but how could he if he has no hair! I started a diary with his breathing and counted 40-45 breaths per min on avg. A week after he came back out of his slumber and I realised he had a really bloated belly. I called our local vets (the ones that had reunited him with his owner) and she mentioned I should continue checking his breathing but that for the time being they weren’t seeing patients. He was eating and pooing as normal so they said he was alright as long as he was doing those two.

I felt like he wasn’t the same old Max and after 2 weeks of the belly not going away (and me realising it was definitely not dog’s food or him being fat) they finally agreed to see him.
So last Friday the vet saw him and said it was bad news and he may have a heart murmur but needed to be taken to hospital as his lungs and stomach were full of liquid.
She had started a dose of Furosemide but he needed to have it continued overnight and have an echocardiogram in a hospital to scan his heart properly.

He spent the night at Blue cross hospital that Friday night and for me it was probably the saddest night of my life not knowing if my baby was gonna make it out as the doctor said it wasn’t looking hopeful. We prayed and lit up candles.

(Despite it all being so weird already bc of the lockdown - I wasn’t allowed anywhere, barely even managed transportation to take him there, The owner actually lent me her car).
Against the odds he made it through and got discharged on Saturday night. He had lost 600ml of excess liquid (came back skinny as bones) and the results showed he suffers from TOF (Fallot Tetralogy) a vert rare heart disease that animals can be born with. In Max's case he has got 3 defects in his heart, a small hole and 2 defective valves.
The doctors said his prognosis is very poor and only has weeks to month. I am trying my hardest to stay hopeful. I want to think he’s already been through so much in his little 2 years 9 months of life, so he’ll make it out of this one.

I then joined a FB group of pets with FOT, there's only 7 members. Their pets seem to have the same symptoms (apart from the bloating) but despite them also having a poor prognosis, some have defied the odds and are still alive after 6-8 years.

He’s on furosemide 1ml every 8 hours. We follow it religiously bc we don’t want his lungs and chest filling up with water again. The doctor said it may already be happening.

As I write this, Max has been out of hospital since his diagnosis and the removal of 600ml of excess liquid in his belly and lungs for 1 full week. Initially it was a bit tough as he was extremely weak, acting like a little drunk man, tumbling, lethragic and not wanting to eat much. I now realise that was the Furosemide kicking in. Within 3 days he was back to his happy self, jumping around, running and devouring his food day and night. Unfortunately his bloated belly is back with a vengeance. His breathing is still under 30/min which means its not affecting his lungs or his heart but he's not able to realease the liquid fast enough and just keep filling up. The vets have said that we may be able to change the medicine (tomorrow as it needs to be ordered and that can still take a few days) but that to remove the extra liquid he may have to sedated again and stay in hospital overnight and with his heart condition it is not ideal for him and that I need to consider sending him to babies heaven which I'm simply not sure how to do or even if I can go through it with. I am trying to make this only about him and giving him the best life he can possibly have. I want to give him the chance to live a good life.

He's so happy and bouncy now that I'm so confused and not sure what I should do. (Here are some pics of when he came back from hospital and back with his bloated belly again). Does anyone have any advice? Has anyone been through something similar?

Thank you for reading!
Patty

Pics: 1. The day we found him. 2. In his favourite sunny spot. 3. Sleeping baby. 4. Sleeping with the enemy. 5. When he came back from hospital. 6. Today with his big belly again
Aww im so sorry to hear about your troubles with TOF Im glad you were able to give him such a good loving home after the owner couldn't keep him Sphynx are the best :) We don't have a cat or animal with TOF but... my son has it he is 9 and has had 5 open heart surgeries all before the age of 3 he will need more but is stable for the moment when we found out i was 31 weeks pregnant he was in heart failure and he needed a blood transfusion in utero so we did that but it didnt work he was born at 32 weeks and was not expected to make it but did he gets blood transfusions every 2 weeks for a different condition called diamond blackfan anemia but his heart although leaky is doing good if you ever need to chat feel free to message.
 

pattyleo182

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Aww im so sorry to hear about your troubles with TOF Im glad you were able to give him such a good loving home after the owner couldn't keep him Sphynx are the best :) We don't have a cat or animal with TOF but... my son has it he is 9 and has had 5 open heart surgeries all before the age of 3 he will need more but is stable for the moment when we found out i was 31 weeks pregnant he was in heart failure and he needed a blood transfusion in utero so we did that but it didnt work he was born at 32 weeks and was not expected to make it but did he gets blood transfusions every 2 weeks for a different condition called diamond blackfan anemia but his heart although leaky is doing good if you ever need to chat feel free to message.
Dear @OddlyNude i am really sorry to hear about your son. I hope he’s doing well. I actually joined 2 TOF groups on fb, one for pets (7 members) and another one for humans (7k+ members) so I can learn more about the condition.
They seem to be a very nice group and share their stories and worries.

Thank you for your message <3
 

Toa and Ross

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Max is a handsome boy and a lucky boy to live with you. Must be so hard to see your boy going through all this
 

pattyleo182

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A little update on Max today. Yesterday his breathing started going up to 35-38/min from the 27 average he was on. I got very scared as that can only mean the liquid is reaching his lungs so I posted on my local nextdoor neighbour community asking for vet/ heart specialist recommendations. I got so so many responses so i decided I will call every single one of them.
By this morning his breathing was back down to 30 and its been stable. I wasn't too successful in managing an appointment, many places need his history, scans, documentation and even still don't have an actual appointment for another few days. Even the best Heart department in the country at Royal Veterinary College (RVC) in England is currently shut and running low on staff. But in the end I was advised to get my local vet to refer him. I will make sure they do this tomorrow first thing as I feel I'm battling against time.

He's actually still very happy, playing with his laser, scratching his scratch post and eating and drinking loads. And I'm also trying to enjoy every single minute with him... just can't believe he's so young (2yrs 9mo) and going through this.

I'm attaching a few pics of how bloated his belly has gotten in a 9 a week since he was released from hospital after his drain.
 

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Sheldon13

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Bless his sweet heart, it does look like he needs his belly drained again. Give him some kisses from me.


Love and Sphynx ~ It’s all you need
 

pattyleo182

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I’m so sorry Patty. That is truly disappointing. It’s even more disappointing to me that the vet is unable to treat him. Is there another vet you can go to that will have the necessary supplies? Is there a veterinary cardiologist near you? They would be best and could really tell you for sure if it’s time to let go.


Love and Sphynx ~ It’s all you need
As I explained before but for those just reading the post. Most of them are closed due to corona and taking days and days even for a telephone consultation and getting history charts - hospital are basically working emergencies back to back. But I’m not giving up.
 

pattyleo182

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Bless his sweet heart, it does look like he needs his belly drained again. Give him some kisses from me.


Love and Sphynx ~ It’s all you need
It does! That's my first instinct too, drain him, but I am struggling to know if it's the right choice. The way the vet puts is: it's introducing room for a lot of issues every time you prickle him with the needle in his ribcage. There's room for infection, complications with sedative, stressing his heart even more, stress from even going to hospital, etc, etc.

I just feel like it's also giving him another chance. Anyways, really struggling with it too. I will raise it again with docs anyway
 

Sheldon13

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Well when it comes down to needle in the chest or difficulty breathing, I’ll take the needle every time.


Love and Sphynx ~ It’s all you need
 

pattyleo182

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Well when it comes down to needle in the chest or difficulty breathing, I’ll take the needle every time.


Love and Sphynx ~ It’s all you need
Even if its a thing that they'd have to do weekly? (I don't even know if they would). And i know his recovery was at least 4 days after... he was so so dizzy and tumbley. Like a little drunk man so I had to stand next to him all day making sure he didn't fall.

Even now i'm terrified of hearing any noise :/ thinking it may be him... The doctors also mentioned sudden death a few times :(

It's just I cant piece together just yet as Max is still happy old thing walking around as nothing.
 

Yoda mom

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@pattyleo182 , Max is one blessed boy with all your love and care. you are his angel. He only knows your love. I went thru a heart issue with my girl years ago. I know that watching and listening for everything and watching them like a hawk to make sure they are okay. half the time I went and checked she was laying in the sun like mum, I am fine. they live in the moment and we take every one as a gift. Max surely has the best of love and care. your love for Max leaps off the page. extra head smooches and big hugs to you. following closely for updates.
 

pattyleo182

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@pattyleo182 , Max is one blessed boy with all your love and care. you are his angel. He only knows your love. I went thru a heart issue with my girl years ago. I know that watching and listening for everything and watching them like a hawk to make sure they are okay. half the time I went and checked she was laying in the sun like mum, I am fine. they live in the moment and we take every one as a gift. Max surely has the best of love and care. your love for Max leaps off the page. extra head smooches and big hugs to you. following closely for updates.
Thank you @Yoda mom today I realised I’ve felt like I’ve been mourning even when he’s still here next to me, coming for cuddles, crying for more food, sunbathing, scratching his post.
So I decided I’m gonna make this time count, enjoy the little moments and quarantine time with him and keep on pushing for a specialist to see him.
❤❤❤
 

OddlyNude

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Dear @OddlyNude i am really sorry to hear about your son. I hope he’s doing well. I actually joined 2 TOF groups on fb, one for pets (7 members) and another one for humans (7k+ members) so I can learn more about the condition.
They seem to be a very nice group and share their stories and worries.

Thank you for your message <3
It’s honestly a very scary diagnosis for a human so I can only imagine a cat as our sons surgeon has 30 years experience doing open heart surgery :( I can only imagine what you are going through hopefully some kind of med routine works so you can have more time with your baby
 

pattyleo182

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Hello all, Royal Veterinary College Queen Mother has received Max's referral - they are meant to be the best in the country, though I am not sure how staffed their Cardiology department is atm. I also just sent all his additional info (photos, videos, breathing chart, history chart, diagnosis from the Blue Cross). They were going to offer me a telephone consultation for £250 so I asked for a face to face consultation because I know it is simply not the the same. If he gets the appt, he'll be picked up from the carpark (just as most of the appts we've done).
So I'm just waiting for their phone call. At the same time Doctor Rajat Rukherjee from Wood Street Hospital (he's meant to be one of the best cardiologists in the country and has won awards), is also currently looking at his history and they will call me once they've made a decision.
It was nice to hear from his secretary that Dr. Raj is not known for putting pets to sleep and he will always try his hardest to find a solution. He's also a heart specialist.
London Cat clinic also got back to me saying the referral to the RVC Queen mother's was the best solution. Please send a prayer, lit up a candle or send positive vibes Max's way so there's a solution for his little heart. <3 Thank you all!
 

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